Advocating for your aging parent’s health shouldn’t have to be a fight with the system.

I was going through some of my notes from mom’s hospitalizations that took place after her fall in a grocery store in November 2014. I came across a letter I’d written to the corporation that owned mom’s rehabilitation facility. Though this happened nearly eight years ago, and mom’s been gone almost three years now, I feel this information can help others.

Getting our aging parents the care they need should not have to be a fight, but often times it is.

Dear G——-,

My mother fell and broke her hip on November 24, 2014. She had to have a partial hip replacement and was admitted to T—– facility in December. One week later, she returned to the hospital to be treated for pneumonia and dehydration. In mid-January 2015 she returned to T—— where she remained for the next eight weeks, from January 15 to March 13, 2015. During that time, there were some problems that had a direct effect on mom’s health and recovery. This letter is an attempt to address our concerns. The events are as detailed as possible and not in chronological order. 

First there is the issue of my mother’s blood pressure which had been high for the last several years. Mom’s rehab physician Dr. B—– spent a lot of time telling us that his mission was to get mom off as many medications as possible. Prior to the accident, mom and her primary care physician had worked hard to find a mix of blood pressure meds and dosages that worked. During rehab, there was a time when mom’s blood pressure was high and my sister had asked the medical staff what they planned to do about it. Dr. B—– insisted that it was better that mom’s blood pressure be a little high because if it were low, she would be a fall risk. It made sense and we accepted it.  Sometime later in rehab her blood pressure dropped to unusually low numbers for her.We’re talking abnormally low numbers. We questioned that and then Dr. B—— stated that the low blood pressure was a good thing because it allowed him to take mom off unnecessary medications and she would be better off, but that statement conflicted with his earlier statement that it shouldn’t be low due to fall risk. Every time we questioned it our concerns were dismissed. Dr. B—– saw mom’s low blood pressure as a sign he’d done something right and he made sure he let us know that at every opportunity. Given mom’s normal BP had been higher for so long, we were concerned about the sudden drop. Our inner voices told us it had nothing whatsoever to do with medication, but the doctor again refused to listen.  Dr. B—– he insisted we should be happy my mom’s pressure was so low and for him, that as the end of it. It is important to keep the blood pressure problem in mind because it will come into play later. 

Second, we have the issue of the Budesonide, the medication my mother takes for Crohn’s disease, which is a debilitating chronic illness. My mother’s GI specialist is a world renowned physician and she and mom worked for years to find a medication to control her Crohn’s. The Budesonide is the only medication that put the Crohn’s in remission. It took forty years to find one that did.

On January 16, 2015, I gave one of the nurses, Aaron, a prescription bottle containing 100 Budesonide pills after having been informed T—— could not obtain it due to insurance issues. I was surprised, telling him that nobody had told us that during mom’s first visit back in December. At that moment, it hit me that if they could not get the medication themselves and no one had asked me for mom’s prescription, it was very likely mom did not get any of her Budesonide during her previous stay.

On February 22, 2014, while visiting mom around noon, I observed the nurse administering her medication. Looking into mom’s cup I saw only one 3mg Budesonide pill. I didn’t think anything of it until later when I was at home and looking into my medicine cabinet where I’d stored mom’s meds, my eyes caught the Budesonide label and that’s when I noticed the dosage was three 3mg capsules once a day in the morning. The dosage mom had been given was not only in the afternoon but only one pill. I became concerned and worried that the reason mom had so many stomach problems (to the point where vomiting and diarrhea kept her in bed and out of therapy for almost a week!) was because she was not being given the proper dosage. Her inability to eat and drink properly led to dehydration.

The situation got worse. I did some calculations and realized that the first bottle I gave to T—— in January should’ve expired by February 22nd. After all, it contained 100 pills and at three pills a day and if her first dose had been administered her first morning there, which was January 16th it would’ve been finished on February 18th. But no one had called me from the facility asking for more pills. I contacted T—— and they assured me that there may have been a minor error but since the first bottle was almost out, it proved the patient was getting the proper dosage most of the time, so there was no reason for me to worry. I took them at their word, assuming perhaps the day I was there mom got the wrong dose at the wrong time of day, and that may have been the only time it occurred. I was advised that day to take in the second bottle of Budesonide since the first one I’d given them was nearly empty.

On February 23, 2015 I discussed the errors in dosing the Budesonide with the Nursing Director who explained to me that the problem with mom’s dosage was that the nurses weren’t reading a second page in the computer file that contained the full dosage info. She assured me it was fixed and upon request I handed her the second bottle of 100 pills with an assurance mom would receive the proper dosage.

On March 5, 2015, mom’s discharge for the following day was postponed because the facility administrator and mom’s therapists said mom wasn’t making adequate progress. Mom had been doing extremely well but stomach issues had set her back that week. She had diarrhea, vomiting and was very tired and in a lot of pain.  She immediately recognized it as the same types of problems she had during a Crohn’s flare-up. During that meeting the administrator implied my mother wasn’t working hard enough in her rehab. It was kind of difficult for her to work hard considering her stomach hurt so much, her legs were swollen and painful and she didn’t feel well. The administration treated mom like a child during that meeting and then finally made her stay another week.

On March 12, 2015, the day before mom was due to be discharged, I was on the phone with her health insurance company discussing coverage for a particular prescription. During the course of the discussion, I was informed that the Rehab facility filled a prescription for Budesonide on February 27th. This took me by surprise because not only was I told back in January that they could not obtain Budesonide on their own, but I’d just given them a second bottle of pills. I brought this up to the Nursing Director who said she would look into it.

A day later, on March 13th, mom was discharged and I asked them for the pills they’d filled on February 27th. Not only did they give me that prescription pack but they gave me back the two bottles I’d originally given them! I was shocked because both bottles were full. I’d been lied to.

When we got home, I counted the pills: the first bottle contained 90 of 100 pills. The second bottle contained 73 of 100 pills. The packet they ordered contained 87 of 90 pills. Total pills returned to me = 250.

Mom entered rehab the evening of January 15th so her first day getting the pills in rehab would’ve been January 16th. She was discharged on the afternoon of March 13th which means it would’ve been the last day she received her pills in rehab. That is exactly 57 days. The math is simple: three pills a day times 57 days = 171 total that should’ve been administered.

Since the first bottle was missing only 10 pills and the second bottle was only missing 27 pills, and the packet was only missing 3 pills, it means the total number of pills administered was 40. That’s 40 out of 171. That leaves 131 pills my mother did not receive.  It’s no wonder my mom suffered so much stomach pain during her stay at T——; she wasn’t getting the proper dosage! Prior to this, she’d been in remission for more than five years.

The third and final major issue is the blood clots. During mom’s final eight week stay in T——, she endured serious swelling in both legs. Dr. B—– informed us that this kind of swelling was normal and he said if my mother’s legs were wrapped in the morning and removed only at night and if she kept her feet up all day and night, the swelling would go away. Sometimes it went away, but only for a few hours. It always returned and with a vengeance. Early on in rehab, her legs experienced intense pain when touched, the skid was red and warm, she had visible surface veins and eventually began having intense pain in the thigh, calves and behind her knees. The entire time she was told it as all related to her therapy.    

After we insisted that they do something more than just wrap mom’s legs all the time, her doctor prescribed Lasix, but it did not eliminate the problem as she then had seepage in her elbow and legs. Additionally, we had serious concerns about the effect of the Lasix on mom’s kidneys. Mom had been getting monthly Procrit injections for years in order to stimulate the growth of red blood cells (which begins in the kidneys) to fight her chronic anemia. Once again, no one listened.

I should also note that the entire time during her rehab, mom had circulation problems worse than any she had ever experienced. She had cold feet, cold fingers and it was difficult to get a pulse-ox reading from her fingers or toes most of the time. The only way the nurse could get a reading was to massage my mom’s hands vigorously to get circulation. But of course they took this as normal, when it was not.

One day mom told Dr. B—- about the continued intensity of the pain in her thigh, near the groin. He laughed and said “it’s a pulled groin muscle; I get those all the time.”  He shrugged it off and nothing was done. In the meantime, the swelling in her legs continued; the skin was tender, red and warm. My sister and I knew something was wrong. Mom knew, too, but every single time we complained, the doctors and nurses dismissed our concerns. We were thinking about blood clots early on because mom was at extreme risk: over 60, history of clots, injury and surgery, prolonged bed rest, past history of smoking, Crohn’s Disease, congestive heart failure, and sitting/lying down for a long period of time. She also had all the classic symptoms: redness, swelling, warm and tender skin, pain in the calves, fatigue, shortness of breath, and low blood pressure. She had all the classic symptoms and all the risk factors. All of them.  

Mom was released from rehab on what would’ve been our dad’s 69th birthday, March 14, 2015. The very next day, a nurse from the home health agency visited mom at home for an evaluation for home therapy. Mom was noticeably weaker upon her release from rehab then when she’d entered it three months earlier. She should have been stronger; she was not. It was hard to believe they discharged her. The home health nurse found mom’s blood pressure was dangerously low – 80/49. She called the ambulance and EMS transported mom to the hospital. That night the doctors diagnosed mom with deep vein thrombosis, with three major clots, two in the left leg (popliteal and femoral) and one in the right leg (popliteal). They also diagnosed her INR above 10. The first question the ER doctors asked us, because the INR was so high was, “who overdosed your mother on Coumadin?” This was shocking considering my mother’s medication had been strictly controlled by the rehab facility and she hadn’t been on Coumadin in years. Thankfully, the trip to the ER saved mom’s life. They treated the clots and released her one week later. When mom was released though, she was even weaker than when she went into the hospital. This time she came home, but she was so weak, it was as if all the work she’d done in rehab had been undone.  

The first week mom was home from the hospital after the blood clot issues, she was so weak she wouldn’t eat or drink and had lost most of the use of her legs. I tried to help her myself, but it was too much for one person. I realized I needed my sister’s help and she arrived from Orlando the next day. At that point, mom was too weak and in too much pain to move so she could only use a bedpan and she cried every time we moved her. During that first week, my sister and I had to do everything for her. She could not be left alone, and she was a two-person assist. My sister lost her job that week because she had to make a choice—work or take care of mom. I had to take off work for days at a time to help.  Mom needed help 24/7 and always had to have one of us in the house at all times.

Six weeks after her hospital visit, mom was still receiving home health visits at three times per week, she was using a walker and just learning to use a cane, though sporadically. The pain in her legs had subsided a bit, but she was still weak at times. She had a fear of falling, mostly because she was terrified of returning to a hospital and rehab for another four months. Some of the pain she endured was from the clots and some from the muscles being worked that went unused for so long. She worked hard but it took a lot of time for her to get at least half as mobile as she was before she fell. She had been by her therapists that it would be six months from the time she arrived home to the time she would be off the walker and at least using a cane regularly.

So many mistakes were made. Had mom received the proper dosage of her medication, her stomach would not have been so messed up and set her back weeks in rehab. Had mom’s blood clots not gone untreated in rehab, things would have been different. The emotional and physical toll of mom’s illness, specifically what happened to her in the months in the rehab facility took its toll on mom, my sister and me in ways you cannot imagine. It left the three of us emotionally and physically distraught. That said, what’s done is done and it can’t be changed but G——- has the power to at least help make things right again. I implore you to consider the events that took place and do something to ensure this kind of treatment never happens again at your rehab facilities. I’d like for someone in a position of authority to call us and talk to us about the experience. I’d like someone to show they’re sorry for all she went through and show that they care about her recovery. For a facility that receives such rave reviews, your staff completely dropped the ball here. And our mom paid the price. How many others will pay that price, too?

This is completely unacceptable, and it cannot be permitted to happen again. Please do something. You can do better. You have to. People will die if you don’t.

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